More losses from benzo withdrawal

[[Re...]]

 

I have been posting a lot on here this past week and I will be taking a break after I interact with other members on this post. I want to say this post comes with a trigger warning as I am sharing some possibly triggering details and fears. So if you are particularly sensitive, don't keep reading.

I am in shambles at this point, totally and utterly hopeless and terrified. I have spent the last two years in interdose withdrawal running from doctor to doctor thinking I had every disease under the sun for it to turn out to be Ativan. Then to be ripped off that Ativan 19 months ago by a medical detox slammed on Seroquel and many other drugs and now off of everything for nine months with no windows at all. I was given TMS and Ketamine treatments as well as so many other unnecessary drugs for "treatment-resistant depression" for five years.

While I am thrilled to be off of all drugs and will NEVER go back, I am beside myself with grief while at the same time being totally and utterly desensitized from the devastating stories and losses of people in this community over the last 18 months. A few recent losses this year gutted me. It is also scary to know that people succumbed to this, but what scares me more is how many years they suffered with the collateral damage from all of this and not healing 100 percent. And the thought that it could be anyone in that position.

Last year alone this issue cost my family close to $120,000. That came out of a parent's savings account who needs that money for retirement. I have not been able to work in two years or earn money. Now, due to caretaker fatigue, I am being asked to leave my current living space. Due to the frozen shoulder, I require daily help which costs money. I will likely have to go through costly physical therapy for my shoulder and jaw due to this frozen shoulder debacle. Plus having such muscle wasting from not exercising in two years and the extreme physical sensitivity I will need help to avoid hurting myself further when I do start exercising. I have no job and I don't have enough savings to sustain myself if symptoms go on for years. I do not have a spouse or children or anyone to help take care of me.

While I have seen some slow improvement, mainly with the akathisia and sleep, I still have so many symptoms:

Acne
Akathisia (slight now, comes and goes)
Body Odor
DPDR (comes and goes)
Dry Skin
Ear popping
Esophagus pain (new)
Eye floaters in bright light
Fatigue
Frozen shoulder
Gum pain (new)
Headaches
Heart Palpitations (only in the middle of the night)
Hyperacusis
Inner vibration
Muscle pain and tremors
Nose burning
Numb hands
Paresthesia all over / pine needles feeling like pressed into the skin
Restless legs (once in a while)
Sensitivity to smells, foods, stress, sensitive to light
Tinnitus
Tongue pain / Geographic tongue (new)
Mouth/Tongue spasm (new)
TMJ pain

At this point, I know better than to compare myself with someone else and quite frankly I am sick and tired of reading success stories as they have no bearing on my situation because we are all so different. Plus there is an absence of new ones on this site which is a bit disappointing. I had inspiration and hope earlier on but being this far in and in the position I am currently in might not be a good sign that healing is around the corner like I had wished that it was. It is quite possible I could be in this for years and that does not take into account possible setbacks which I now realize are so common.

I am reading stories now of people dealing with physical symptoms for years and seeing how many people deal with longer-term issues from these drugs. The reality is that some people are reporting that at six, nine, 11, 15+ years off they are still dealing with symptoms. While one could say don't read those people's experiences, they are real and should be given compassion for their struggles. They are an equal part of our community and should not be shunned or shamed. I do not wish to get into a debate about whether everyone heals or not -- nobody knows. I know it certainly won't boost your mood to think you are never going to heal.

I do not know how long I am going to go through this and it does not feel like any quality of life. To now have to lose housing on top of everything else makes this 1000 times worse. If I could drive or carry bags I would be better able to handle living on my own and working some but with a frozen shoulder plus all the other pain I am in it feels insurmountable. Plus, how am I going to pay rent in a year or two if I am not able to work and still dealing with this nonsense?? And what if I start to work and then have to be so careful to try to avoid the game of whack-a-mole of potential setbacks and how many people are reporting having them years out seemingly out of the blue? Plus the idea that once you have akathisia, there is no getting treatment for other medical conditions. I know some people also get better and maybe don't have the setbacks but you just don't know what you are going to get and for the rest of your life, I will have to be unrealistically cautious. At this point, I do not even wear makeup out of fear of some chemical additive triggering akathisia again. I cannot use proper skincare or get a facial. My hair is a mess, I haven't exercised in two years, my skin is broken out, and I can't paint my nails. How am I supposed to work in the professional world when I cannot take care of my appearance? I cannot eat freely, I cannot take a flight, I am terrified of germs and a possible setback so I do not leave the house not to mention being constantly fatigued from pain anyway or being hammered with tinnitus and hyperacusis all day which is a continued energy suck.

I am not sure what I need or want from this post. I am fully informed about recovery from neurotoxic injury. There likely isn't much you can tell me that I haven't researched in some capacity. I guess I just need to write. I have been crying and crying and crying feeling like this is no way to live. While I am grateful that I am not where I was at this time last year, the loss from this seems to keep going and going and now it is hitting my living situation and financial life. I guess I am fortunate this did not happen sooner. Like everyone else, I am simply battle weary.

 

Edited April 9 by [Re...]

[[Da...]]

Rebecca, I can honestly say I can empathize as your situations sounds so much like mine.  I know I cannot live on my own and am terrified of what is to come.  My husband, who has supported me all these years, is in caregiver burnout.  Our marriage ended years ago because of these drugs.  He needs his life as he cannot babysit me anymore.  I do have another house in another Province, however I do not have a support system there.  It's not even close to a city where I could access grocery deliveries.  I can't go get my hair done, cannot cook, clean, cannot even sleep.  Like you all I do is cry as this is no way to live.  Though I don't have to worry about work...not socializing, the inability to focus on anything except my looping thoughts is taking its toll.  Like you I am so very scared that my only option will be long term care at the age of 52!!!!  I know I have to make a decision soon, my husband is ready for it and I hate that I am holding him back.  I have lost everything important to me and all my dreams for the future.  You are not alone.  Hugs to you, it's not much but it's all I can offer xxx

[[Bu...]]

@[Re...],

I am so sorry.  I think I can relate a little bit with you.  I've been sick for 14 years and I think it's from the clonazepam.  Everything changed back then and keeps changing and I'm tired.  I'm not in the spot you are though, and to read of your situation makes my heart ache. 

I understand you needing to step away from here for awhile, but I just wanted to let you know how much I have enjoyed our interactions this week.  It seems we found ourselves on the same threads several times and I always liked reading your posts.  I hope to keep that one about what we have learned going.  I think it was a good one.  Blessings. ❤

[[PE...]]

12 hours ago, [[R...] said:

 

"once you have akathisia, there is no getting treatment for other medical conditions."

Hi.

What what was that part about akathisia?

 

[[Re...]]

11 hours ago, [[D...] said:

Rebecca, I can honestly say I can empathize as your situations sounds so much like mine.  I know I cannot live on my own and am terrified of what is to come.  My husband, who has supported me all these years, is in caregiver burnout.  Our marriage ended years ago because of these drugs.  He needs his life as he cannot babysit me anymore.  I do have another house in another Province, however I do not have a support system there.  It's not even close to a city where I could access grocery deliveries.  I can't go get my hair done, cannot cook, clean, cannot even sleep.  Like you all I do is cry as this is no way to live.  Though I don't have to worry about work...not socializing, the inability to focus on anything except my looping thoughts is taking its toll.  Like you I am so very scared that my only option will be long term care at the age of 52!!!!  I know I have to make a decision soon, my husband is ready for it and I hate that I am holding him back.  I have lost everything important to me and all my dreams for the future.  You are not alone.  Hugs to you, it's not much but it's all I can offer xxx

Darlene, I am so sorry that you are going through this and lost your marriage to this as well. I know others this has happened to and it breaks my heart. How long have you been off of all drugs? Do you live in the US as well?

[[Re...]]

10 minutes ago, [[P...] said:

Hi.

What what was that part about akathisia?

Akathisia is a drug-induced neurological condition that can be reoccurring. It isn't always, but it can be. Over 200 pharmaceutical drugs cause or can exacerbate akathisia which makes further medical treatment riskier with this history. 

 

[[Re...]]

1 hour ago, [[B...] said:

@[Re...],

I am so sorry.  I think I can relate a little bit with you.  I've been sick for 14 years and I think it's from the clonazepam.  Everything changed back then and keeps changing and I'm tired.  I'm not in the spot you are though, and to read of your situation makes my heart ache. 

I understand you needing to step away from here for awhile, but I just wanted to let you know how much I have enjoyed our interactions this week.  It seems we found ourselves on the same threads several times and I always liked reading your posts.  I hope to keep that one about what we have learned going.  I think it was a good one.  Blessings. ❤

@[Bu...] I am so sorry to hear that you have been sick for so long. I truly hope that you turn a corner soon. I want the best for other buddies -- even if the healing isn't happening for me at this moment, I do want others to be free. Thank you for your kind words, right back at you.

[[PE...]]

5 minutes ago, [[R...] said:

Akathisia is a drug-induced neurological condition that can be reoccurring. It isn't always, but it can be. Over 200 pharmaceutical drugs cause or can exacerbate akathisia which makes further medical treatment riskier with this history. 

When it's at it worse in my acute i could only sit for a few seconds at the time. I walked like a robot in my small apartment 14 hours a day until my legs hurted making me limp. I don't want that back ever. 

[[Kr...]]

@[PE...]thaybsucks

Edited April 9 by [Kr...]

[[Kr...]]

14 hours ago, [[R...] said:

At this point, I know better than to compare myself with someone else and quite frankly I am sick and tired of reading success stories as they have no bearing on my situation because we are all so different

Thank you, success stories make me feel worse too. 

[[PE...]]

3 minutes ago, [[K...] said:

@[PE...]thaybsucks

You mean quetiapine?

[[Kr...]]

Yes. Q. Very toxic and I’m not sure you should be taking it in and off like you do. Wouldn’t that just make your brain go up and down?

[[PE...]]

1 minute ago, [[K...] said:

Yes. Q. Very toxic and I’m not sure you should be taking it in and off like you do. Wouldn’t that just make your brain go up and down?

So far i don't feel much difrent when taking it or not. 

This thread and some reading made my eys pop though. I will take it less frequently for sure.

[[Kr...]]

4 minutes ago, [[P...] said:

So far i don't feel much difrent when taking it or not

If you got through the aka and acute sxs then why are you still taking it! ?

[[PE...]]

1 minute ago, [[K...] said:

If you got through the aka and acute sxs then why are you still taking it! ?

No I didn't take it through the acute. I think I started taking it my third month off.

Because it makes my symptoms less.

[[Re...]]

45 minutes ago, [[K...] said:

Thank you, success stories make me feel worse too. 

There’s also a lack of newer stories for some reason. When I first got on this site 18 months ago, more people were posting success stories.

[[Kr...]]

3 hours ago, [[P...] said:

No I didn't take it through the acute. I think I started taking it my third month off.

Because it makes my symptoms less.

Did you have mental symptoms or just physical?  Have you ever heard of using opioids to calm down symptoms? 
 

[[Nu...]]

I'm sorry to hear of the difficulties you're experiencing in this journey, @[Re...]. My heart and thoughts go out to you...

[[Re...]]

1 hour ago, [[N...] said:

I'm sorry to hear of the difficulties you're experiencing in this journey, @[Re...]. My heart and thoughts go out to you...

Thanks, buddy. I appreciate you.

[[PE...]]

16 hours ago, [[K...] said:

Did you have mental symptoms or just physical?  Have you ever heard of using opioids to calm down symptoms? 
 

Funny you asked I was just mentioning it in another post. When in 2 weeks acute my mother gave me some painkillers with codeine. The effect was fantastic. I stopped pacing and could eat.

Today after 48 hours since i last took Quetiapine suddenly my tinnitus went berserk!! Couldn't hear the TV. So I took 150mg witch is half a pill. I will make some kind of taper but have still symptoms from the benzo wd so i will go easy. I will try to make some kind of cycling between mirtazapine, that I haven't took any for two weeks, and quentapine. 

I can't go back to vomit 24/7 and march around my home like a maniac again.

[[Da...]]

On 09/04/2024 at 04:45, [[R...] said:

Ketamine treatments as well as so many other unnecessary drugs for "treatment-resistant depression" for five years.

They had me do Ketamine as well....combined with my polydrugged Benzos, it was not good...I often say I feel like I never broke through from the last session.  I had many words with my Psych...as active Benzo use is a disqualifier for Ketamine.  I wish I had found this group before going through it.  I asked him why he would keep doing this to me if I was treatment resistant!  Additionally, when I reported to him neurological changes he was to send me to a neurologist given things showed up on MRI that I did privately.  Contacted lawyers office for negligence but decided I am too messed up to fight.  Oh they wanted me to do ECT as well!  That Pysch even had the nerve to ask me who prescribed Clonodine to me!!  OMG HE did.  I shouldn't be surprised - for one of my appointments he was driving!  I now have a new Psych.  Just sent her the Ashton Manual - not so much for taper, as I had no choice but to take that in my own hands, but so she is aware of these drugs.  I think every pharmacist should have a copy because PSYCH's don't care - they are the dealers!  My pharmacist read it as soon as I mentioned it to her and she was amazing!  She said it made perfect sense.  Now with anything, vitamins etc......I consult her and she knows if it may interact with Benzos.

Edited April 12 by [Da...]

[[Da...]]

On 09/04/2024 at 17:28, [[R...] said:

Darlene, I am so sorry that you are going through this and lost your marriage to this as well. I know others this has happened to and it breaks my heart. How long have you been off of all drugs? Do you live in the US as well?

Hi, I am not off yet but having doctors play with drugs in the hospital in December...I took matters into my own hands....I am down to .25 from 2mg Clonazepam - started December!  Had not choice but to do a fast taper as my oxygen levels were severely impacted and I likely have sleep apnea.  So far, I am feeling better with each cut - but I cannot imagine things getting worse - I am already broken and a shell of a person.  I am in Canada.

Edited April 12 by [Da...]

[[Da...]]

On 09/04/2024 at 20:10, [[R...] said:

There’s also a lack of newer stories for some reason. When I first got on this site 18 months ago, more people were posting success stories.

It's kind of like everything else, people take time to look for support but when they are doing well, they have no need to return.  I always tell myself that for every one person who is suffering, there are possibly 2-5 who recovered.  It makes me feel better.  Very few people are going to return to a support forum when they are healed.  Very basics of Human Behaviour.  I appreciate those who do return, and am happy for them but I know their story won't be mine, nor will it be anyone else's here bc we are individual's.  I appreciate the ones who do think of us and share hope.....but many many more will never come back.

 

[[Re...]]

8 hours ago, [[D...] said:

They had me do Ketamine as well....combined with my polydrugged Benzos, it was not good...I often say I feel like I never broke through from the last session.  I had many words with my Psych...as active Benzo use is a disqualifier for Ketamine.  I wish I had found this group before going through it.  I asked him why he would keep doing this to me if I was treatment resistant!  Additionally, when I reported to him neurological changes he was to send me to a neurologist given things showed up on MRI that I did privately.  Contacted lawyers office for negligence but decided I am too messed up to fight.  Oh they wanted me to do ECT as well!  That Pysch even had the nerve to ask me who prescribed Clonodine to me!!  OMG HE did.  I shouldn't be surprised - for one of my appointments he was driving!  I now have a new Psych.  Just sent her the Ashton Manual - not so much for taper, as I had no choice but to take that in my own hands, but so she is aware of these drugs.  I think every pharmacist should have a copy because PSYCH's don't care - they are the dealers!  My pharmacist read it as soon as I mentioned it to her and she was amazing!  She said it made perfect sense.  Now with anything, vitamins etc......I consult her and she knows if it may interact with Benzos.

Pharmacists can be our biggest allies in this. I am glad your pharmacist is helping.